I love my kids

Frances and Brad, Sept. 2006

Frances and Brad, Sept. 2006

I am like 99.9% of the parents in this world….I LOVE my kids. I love watching them play sports and participate in school activities and I love hanging out with them (most of the time). I love the chats we have and I love the laughs at the dinner table. I love that they make me a better person. I love teaching them about the world and I love it even more when they teach me a thing or two. They are actually pretty good behavioral wise and both of them show me love and gratitude on a daily basis. I recognize how rare this can be with a 14 year old and a 10 year old and I am very, very grateful. I suck it up and savor every moment. Sometimes to the point of being a little too emotional and a little too sappy. I realize it won’t always be this way and appreciate what I have right now. They are by no means perfect, but I am proud and I recognize how seriously lucky I am to have them in my life.

There are moments I get really hard on them for not wanting to be with Jim more or for getting frustrated with him; just like I do. I don’t praise them enough for when they do show patience and when they are participating in his care. As with most of life’s moments, we see them clearer when they are firmly behind us. It is important to me to learn from these lessons and to keep trying to become a better mom, a better wife, a better person. The end result will save me from my self -destructive ways and from wallowing into a mass of self pity. It is difficult to feel sorry for yourself if you are constantly critical within your own decisions and behaviors. Some say I am too hard on myself, but when I consider the alternative of accepting my situation and letting myself fall to pieces over and over or become less of a person than I should or can be, I am not thrilled with what that person looks like. I would fall into a deeper hole because I would be so disgusted by looking into the mirror and not liking what I saw. I suppose without Jim to keep me in check, I am forced to do it myself and this is the way I can. I sometimes rely on friends and family, but they try to be too delicate with me for fear of making things worse or just because they want to protect me more than hurt me. Yes, it would hurt to hear something awful about myself, but in the end game, it would be better for me, Jim and the kids.

I often forget how different their childhood is from mine. I remember growing up being terrified for a while that my parents would die; either from cancer, a car wreck or something that would take them away from me. I can vividly remember asking them when they were going to die and begging them to never leave me. I still feel that way. I think most kids go through this phase at some point. Fortunately, those fears were never realized and I am blessed to still have my parents in my life, helping me as much now as they did when I was living in their home.

On the contrary: Frances and Brad have basically always known that their Dad will not be around forever. They don’t complain about it. Actually, they never mention it. I suppose it is just their “normal”. When we started realizing something was terribly wrong with Jim, Brad was just 5. He doesn’t remember anything different. He doesn’t have a carefree life without the burden of Alzheimer’s Disease. Ever. It is as engrained in him as eating fruits and vegetables or washing your hands before a meal. That is all he has known. Although I live in this family with them, their perspectives and thoughts are so different from mine. Their expectations differ and their reality is now including a disease that not only took their grandmother and uncle from them, but is taking their father too. And they are both fully aware, it could possibly take them or their sibling.They are extremely close for children this age and I am sometimes just awestruck at this. Frances has been gone during the week recently and Brad asked the first week she was gone if we could pick her up early, telling me “it just isn’t as much fun when she isn’t around.” And when I picked her up and brought her home, the first thing she wanted to do was see Brad.  I think part of the reason they are so in tune to each other is their common woe of Alzheimer’s Disease and losing their father in this manner.   What must that be like? How would I feel? I know how I feel with it being my husband and possibly one day my child, but what is it really like to grow up with this horrible mess surrounding you constantly? Is it like living in a war torn country? You just get used to it and learn to adapt?

Frances remembers Jim from before he was showing signs, but her personality allows her to be very practical and compartmentalize on a regular basis. I worry one day, when she is older, she will look back and have regrets. I worry I am not doing enough for either of them now to make it easier and more bearable later. I strive to give them as normal a childhood as possible: no favors from teachers or coaches, no special treatment from schools or organizations they are applying to. There are two rules that I will not budge on: not taking advantage of Jim and not manipulating our situation to their advantage. I feel strongly that it will only hurt them in the long run if they rely on his impending death to get away with things most kids their age try or if they are treated with kid gloves.

There are moments I think way too much about all of this, and I want/need someone to talk to….my husband would be my first logical choice, but as you know, it isn’t a choice that is available. So I sit, by myself, trying to single handily determine the best way to parent two children who are not only losing their father a fraction at a time, but who might eventually sit across from a doctor listening to the same horrible diagnosis.

I am sometimes so completely stunned, I am not able to function at my normal capacity. It just can’t happen. I can’t think straight and I can’t decide what to do about anything. I can’t figure out what to fix for dinner or where some papers should go or how to plan our lives financially. The stress and the burden of trying to stay “normal” through a very, very long illness and subsequential grieving process can make a person not only change their personality, it changes priorities, desires, rationality and common sense.

My first and most important goal is to raise two, healthy, children who are not completely scarred by a childhood overshadowed by death. If I can fulfill this objective, I will have been a good mom. I won’t know until years from now. All I can do in the meantime is the best I can, when I can. And then I need to accept I won’t always be my best. I will still be me, but I will just be a lesser version for a time.

Jim, Frances and Brad, April 2013.

Jim, Frances and Brad, April 2013.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (4)

Trapped Alive

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Sometimes when I write this blog, I have to censor myself. I don’t do it to protect myself, but to protect my kids, my family, or Jim. Sometimes it is because the reality of this disease is so harsh, so burdensome, so outlandishly crazy with the fact that more isn’t being done to help that I have to abstain from writing what I really want. There is a novel being written in my mind that would completely shock some and others would be like, “Yeah, I could have written that years ago.”

I am going to attempt to walk a fine line and discuss where I am and where Jim is. Actually a small facet of those.

I feel trapped. Trapped like a caged animal desperate for release. Trapped in a world I have little control in. Slammed against brick walls and thrown into a dark abyss of pain, selfishness and emotional upheavals that are unbridled and uncontrollable. I am stuck with Jim. I am stuck taking care of him and worse; I am stuck watching him become someone I don’t know. I am MARRIED to a person that can no longer use a hotel key card or who doesn’t understand that you can’t put the Costco cart inside of the World Market store. I bare witness to the mumblings and the utter disregard for clean clothes. I know it is politically incorrect to say these things, but I know I am not alone. I know that there are others who have these same thoughts. It is ok. It has taken me a long time to accept this. It’s ok because I don’t ACT on the thought of feeling trapped and suffocated. I am staying. I am here, doing the best I can. This is me, being me. Even when the kids were younger, I would sometimes be waiting for Jim at the door, ready to hand over the reins so I could have an hour of “me time.” And I love being a Mom and love being with them. But I have always needed my space.

When the kids were just babies I would read article after article on how to be the perfect Mom. You have seen these in parenting magazines….How to Raise a Giving Child or What Every Mom Should Do To Prevent Tantrums. I could never live up to the examples that were set in print. Now that I am a caregiver to my husband, I sometimes fall into that same old habit of trying to be the perfect care provider all over again. But this time, I am a little more mature (just a little) and I am being forced into a corner that will either allow me to excel or set my life on an uncontrollable  spiral. But this time, there are clear repercussions if I fail. My children will suffer at my shortcomings and so will Jim. If I don’t do this “right” I could lose the most precious and wonderful things in my life: my children.  I am choosing to excel. In order to do this, I must find a way to accept my faults. To accept my faults, I must be honest. And that is where this revelation comes in.

One of the things that Jim and I did well was accept each other. Sure we each had our little things we bitched and complained about, but for the most part, he let me be me and I did the same for him. Part of my appeal to Jim was the fact I was so independent. I loved being with him, but I liked my space. And so did he. It worked well. We did stuff together and we did stuff apart. He played sports, I hung with friends. We worked around the house together and watched movies together and then we would travel separately for work and it all came together nicely. Now, not so much. He is home. All. The. Time. I am told when I am not with him, he constantly asks where I am, when I will be back, looks out the windows and front door and paces. I haven’t seen it first hand, but I know this is typical behavior for an Alzheimer’s patient. But it isn’t typical for me. Or for Jim. I don’t do well with feeling suffocated. I need my time. To do whatever. It doesn’t even have to be anything major. Just going to the store by myself or walking a trail by myself or catching up with a friend makes a huge impact on my mindset. Over the holidays, I was basically attached to Jim at the hip and without me realizing it, I was subconsciously revolting. It is who I am. How can I change this? It isn’t cool to say you want some space but I NEED my space. I need my time to do whatever I want.

I have so little time left with Jim, shouldn’t I want to be with him 24/7? Shouldn’t I want to take him in; his smile, his laugh, his eyes, his hands, his everything? Shouldn’t I want to be there for every joke he still cracks and to guide him through his day?

No. I can’t. It isn’t part of my personality and even more to the point: I DON’T WANT TO. It is too hard. I hate seeing him this way and he still has a long way to go. And this my friends is the catch 22. I want to be with Jim, but I don’t want to be with Jim. There is a constant ebb and flow of emotions….. the reality is simple: I want to be with the real Jim and right now I am settling for an impostor. He has such a great attitude and still tries so hard and gives so much of himself….but he isn’t himself and sometimes it is too much for me to see him in this state, however amazingly good it is for someone at this stage of the game. It is such a far cry from the sturdy, autonomous, handsome man I have lived with since 1996. It cuts me to the core and sometimes I am just unable to simply be ok with the  man I am currently living with.

So, here I am. Being honest. I am not going anywhere. I am staying put, but in my mind, I am sailing the islands of the Caribbean or sitting on a dock overlooking a mountainous lake while reading a book or taking in the Northern Lights (on my bucket list) or snuggling with the man who always made me feel like a million bucks until he couldn’t anymore. And now it is up to me to make sense of it all just to stay sane enough to carry on.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (19)

Please fix that chick you see in the mirror….

This is such an amazingly good photo of Jim now. I love it. Dec. 2014.

This is such an amazingly good photo of Jim now. I love it. Dec. 2014.

I am searching. For me. For a way to survive. For a way to thrive. For a way to find myself in the midst of sorrow and angst. I am lost in my own mind of worry and contempt. Contempt for myself. I realized over the holiday break I don’t really like myself but I haven’t quite put my finger on why. You must understand I am a realist and I am just as hard on myself as I am on anyone else. Is it because I can’t save Jim? Is it because I have thoughts of wanting it to all be over, which in reality would mean him dying sooner rather than later? Even recognizing how difficult it will be to be a single parent, I sometimes catch myself wanting this to end abruptly so the children (and myself and everyone else really) won’t have to watch Jim lose himself and all he is/was.  Is it because I lose my patience with my children when I am tired or stressed or disgusted by the fact I still need to clean off my desk, clean the bathrooms, do another load of laundry and clean my room and fix dinner? Do I find contempt for the person in the mirror because she isn’t a superwoman after all?

It’s true. I don’t like myself. I don’t like my looks and most of the time I don’t like me. I don’t like the person who needs help all the time. I am blessed by the fact we have many friends who have jumped at the chance to help us. I recognize what a wonderful support system we have and also recognize I wouldn’t survive without them. But I would be much happier being the one to help than the one constantly sucking up whatever is offered our way.

I am emotionally a mess. At any given time I could cry or fill your ears with a myriad of complaints and turn it into a tirade and then end it by feeling guilty and regretting the whole mess. I am constantly trying to get a handle on my mental status, my physical well being and organize my life, my house, my thoughts and my world. But, it is completely impossible to organize anything with a spouse with Alzheimer’s Disease. Things are misplaced. Things are broken. Things are left incomplete. I feel like a mess. I want order and all I can muster is major chaos.

Sometimes, I sit and I look at Jim. Really look at him. I no longer see the man who swept me off my feet….I see the hunched shoulders and the thin body and the timid responses. I see a shell of the man that at one time I thought could do anything and would help me conquer the world. I feel so sorry for him. I don’t want to feel sorry for my husband because I know he wouldn’t want it, but I do. I can’t help it. The contrast from a few years ago to now and I know the contrast that will take place over the next year or so….it breaks my heart. For Jim. For our children. For our friends. Jim deserves so much better. Not just because no one deserves to suffer at the hands of Alzheimer’s Disease, but because he has always been such a stand up, kind, giving and all around good guy.

There are more stories lining up than I can share….but I will share the one that stands out the most to show how I am failing my family…..

I recently had to drive just over an hour away to take Frances for a new adventure in her life. I had a choice; I could drop her off and immediately return home, or I could linger and have dinner with a friend. I chose the latter.

So, Brad was left home with Jim. Keep in mind, I promised myself a long time ago that I would never have the kids “babysit” Jim. So, I get Frances settled and I go to a leisurely, wonderful dinner with my friend. While we are eating, I have my phone on vibrate so I don’t hear or see the two messages from Brad. When I get to my vehicle I call home.

“Mom, where are you?”

“I’m leaving now. How was your day? “

“Good. You didn’t tell me you would be gone for lunch AND dinner. I didn’t know I would have to fix me and Dad dinner too. I thought it would just be lunch. “ Ouch. 

“I’m sorry honey. I just got done with dinner and will be home in about an hour. Did you get enough to eat?”

“Yes. But why aren’t you home yet?”

“I stayed to have dinner with a friend. I told you I was.”

“Ok. I will see you soon. I love you Mom.”

“I love you too.”

Less than five minutes later, I get a frantic call.

“Mom!! Dad is crying. He has his finger stuck in the dog collar.”

“What? Can you undo the clasp? How did it get stuck?”

“I don’t know. It’s not the clasp. We can’t undo it. Mom, he is in pain.”

“Brad, go next door and get Rex (not his real name).”

“Mom, I can’t. I can’t leave him.”

“Yes, you can, go now and get him and he will be able to help.”

“Ok.”

Ten minutes later, I call and find out the neighbor has indeed come over and helped. Once I am home, everything seems fine. Neither Jim nor Brad can demonstrate to me how he had his finger stuck. Jim doesn’t even seem to remember it happened at all.

The worst part comes as I am tucking Brad into bed:

“Mom, I think you need to get someone to stay with Dad. You know. All the time.”

“I know. I have been thinking about it.”

“Well, someone besides me needs to be here in case an emergency happens. Dad can’t do anything and there needs to be someone here to help him when he can’t.”

Yep. Mom of the year right here. My ten year old has more sense than I do. Hiring a caregiver at home seems so easy. But it isn’t. It isn’t just about money (although that is huge). It is finding someone. It is making that call or several calls. It is having someone in your home, in your life, ALL THE TIME;  to see your many facets and to see the clutter and the mess and the ugly side of things. It is an intimate look into your family and your life and it is a huge step to take. I know I am about to take the plunge and I am not happy about it.

Next story:  Clingy and trapped.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (18)

Happy What?

Ice Skating, Dec. 2014.

Ice Skating, Dec. 2014.

There have been so many wonderful things that have happened in my life over the past month. But there have been so many horrible, ugly things too. I feel as if my life is one big oxymoron.

I am overwhelmed. Not just by holiday stresses. Those are actually a few things that pull me away from the normal stresses. Yes, stringing lights on the tree by myself versus the way it has been for the past 18 years sucked. Yes, shopping for everyone (including myself) by myself, sucked. Yes, there have been moments of extreme bitter nostalgia; when you remember how it was and realize it will never be that way again and you just have to keep moving on, but it doesn’t mean you like it and it doesn’t mean you are happy about it. You just do what you have to do.

There are times that I think the kids being so young while dealing with Jim makes it so much harder. And I think how much easier it would be if they were grown and on their own. But, there are more times that I realize them being part of our home right now, in this moment, saves me over and over again. I probably wouldn’t care about a tree or decorating (honestly, I only did about a third of our normal this year) and I probably wouldn’t sing along to songs on the radio quite as much and I am pretty sure I wouldn’t give two cents about watching any Christmas movies or seeing Christmas lights or even worrying about family traditions. Traditions I realize at moments of clarity are dwindling but I steadfastly cling to in the hopes of stabilizing their childhood. Traditions that have become more of a burden than moments of fun and familiarity. I struggled to get the tree from the same tree farm. I struggled to have us all decorate said tree. I struggled to do so many things that have become part of what our family does every year. But this year, I have secretly thought to myself, “Will I do this when Jim is gone? Will it matter and will we all want to do this? What is the point?” It is hard not to picture our life without him when he is still here, yet he really isn’t here, so it makes it somewhat easy to picture a life without him. Again, my life is one big oxymoron. How can he ice skate so beautifully, yet not be able to figure out his seat belt buckle? How can he walk the dog numerous times a day, yet not realize he is still in his pajamas? How can he eat like a horse over and over and never seem full or gain weight? How can he be slipping away from us so steadily and yet so slowly? It is all so confusing. How does anyone manage to live through this for years on end? How can I? How can the kids?

Frances asked for very few things this year for Christmas. Less than five things.(Actually both kids had extremely short lists compared to myself at their age) One of the main things she wanted was to see The Piano Guys in concert. When she first mentioned this, I had no idea who they were. I had never heard of them. So I went online and saw they are  a pianist and a cellist. They play beautifully and their closest concert to us was 4 hours away (with a good day of traffic. For us it would be 5 -6 hours). I contemplated for a very short time before deciding if my thirteen year old daughter wants to see musicians like this as her main gift, well, I am going to make it happen. So, I got tickets for her and I. She would have to miss a day of school, so I didn’t want to add Brad to the mix. About a week out, I realized,” Oh no! I need to have someone watch Jim and Brad!.” That’s right. I hadn’t thought everything through. When I bought the tickets, Jim would have been able to stay the night by himself with Brad just fine. But as time has moved forward, so has his Alzheimer’s. I cannot possibly put into words the sheer heartbreak I felt when I accepted the fact I needed to come up with a solution for that night away. It was no longer just a boys night alone. It was an ordeal and something much bigger than a simple concert. It was a new stage of our game. It was another slap in the face.

So, a friend stepped up to take the two boys. Another friend eagerly watched the dog. It was a lot to plan and organize. In the end, it was worth it. I think Frances and I needed this time away together. It was special in so many ways and I am grateful for being able to do so. We were finally to our hotel when I get a call from Brad. Jim didn’t want to go to our friends’ home (we have been there dozens of times) and he was getting irritated. The friend getting the dog called and reiterated what Brad had told me. The stress that flashed through my body is immeasurable. What could I do? I was 4 hours away and unable to help. Both friends told me to not worry about it, they would handle this and to enjoy the show. But how could I? What if they regretted agreeing to help us? What if this turned into a huge pain for them? What if this is the night that Jim decides to get violent? When I spoke to Jim on the phone, he told me he was fine, never complained a bit about going to stay with someone else and showed no signs of being upset. So weird!! I had wanted to take Frances for a nice meal, but we were running late due to traffic and we ended up getting something quick and heading to the show. We got there after they had started. I could feel myself screwing up the one thing I was trying to do right. I was in a state of panic. Running late and worrying about things back home. It seems that is the normal for me now. I do this on a daily basis as I work and try to keep tabs at home. It is the most stress and the most failure I have ever felt in my life.

The concert was great. I highly recommend them. As we sat and listened to their show, they played a song, Emmanuel, and I listened with such sorrow. It was beautiful and haunting and reminded me of Jim and our love for each other and the fact that I was taking this trip without him because it would have just been too much. As I listened to the sweet sounds, I thought of our plans for the future and past Christmases and how I wondered if he would be with us next Christmas. I looked around at the couples and the families and I hated the fact that our family will never be completely whole again. Yes, Jim is still with us, but in truth, he isn’t. Not the real Jim. Not the Jim that would laugh and participate and want to be part of decisions about what we were doing and what everyone was getting and even acknowledge there is a holiday among us.  I am lonely. I am sad. And I have had a really bad hand dealt to me and to our family. But, I can see the love our friends surround us with. I can see how blessed I am to have my parents to help us. I feel love from perfect strangers. I am forced to re-write our story on a daily basis and I must understand that my attitude and my point of view will determine if that story has a happy ending or not.

I wish you a very Merry Christmas or Happy Hanukkah or Happy Kwanza or just a perfectly peaceful time of year. We all need some peace in our soul and I send it to you and wish it for you. It will be what saves us all.

Frances and I at The Piano Guys concert. Dec. 2014.

Frances and I at The Piano Guys concert. Dec. 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 (12)

Three, two, one….breakdown.

Our family Christmas Eve, 2009.

Our family Christmas Eve, 2009.

I knew this day was coming. I knew I would have a day that included tears and sobbing and full body blowbacks. It happens now on a semi-regular basis and it has been a few months, so I knew it was on my radar. I was just thinking it would be in the privacy of my room, alone in the house and without an audience.

I am not sure how it started. I have replayed the whole scenario in my mind numerous times and I think I have narrowed down the trigger, but because it includes one of the kids and it is personal for them, I am going to remain silent. I will take full and complete responsibility. It doesn’t really matter the cause, there were numerous triggers, there was just one that was the tipping point when the others were the building blocks.

I took Jim to get his new military i.d. After calling and making an appointment and explaining he only had a passport and no other forms of identification, I was told that was all that was needed. In my mind, I was questioning the authority on the other end of the line, but what could I do?  You see where this story is going, I am sure…..we show up late; after some of the aforementioned troubles at home, after getting lost on the base, after asking for directions numerous times,  to a woman who promptly tells me she can’t help us because he needs two forms of i.d. I promptly explain to her that I had called and yadda yadda yadda. She told me there was nothing she could do. I was teetering on that breaking point. I could feel myself exploding inside;  I was like a volcano, ready to erupt but quietly releasing smoke signals instead. I explained again to her that he has no other i.d., he has lost his wallet and that he has Alzheimer’s Disease. My voice was getting louder and more direct and this could have gotten ugly, really fast. But I sat there, biting my tongue,  (Jim of course said nothing) and she silently typed away. The next thing I know she is taking his photo and asking him to press his left index finger on the scanner. But he doesn’t know his left from his right anymore. And he doesn’t know his index finger. And I have to help him. And his signature is a stark contrast to the beautiful penmanship he once graced legal documents with. It was too much.

We barely made it to the van before I lost it. Just lost it. I wailed. I cried. I moaned. I had tears, snot and drool all over the place. Jim just sat there. Silent and confused. Normally, I reserve this kind of breakdown to a solitary party, but today it was open entertainment for him and anyone else who walked by. In the back alley of my mind I was trying to get myself to stop. I knew I needed to get a grip and put my big girl panties on. But sometimes those panties don’t fit and there is no controlling the emotional outpouring that seeps through my body. I mean, really? He ended up getting his i.d., what was the big deal? How can I learn to let go of all the past manifestations?  Let go of the shattered handmade pottery bowl a friend who moved overseas gave us. Let go of the indoor plant that was knocked on the floor, complete with broken pot, dirt everywhere and now a dead plant? Let go of the constant lost look on Jim’s face. Let go of the misplaced items and the inside out clothes and the lost conversations, the loneliness and emptiness and the bitter sadness that has become at home in my soul. How do I release the frustrations of each reminder of the Jim that is no longer? How do I appreciate the Jim that still is while longing for the Jim that was?

Eventually I started gagging and convulsing enough it snapped me out of my hysterical state. I had mascara down my face. My nose was red. I had used up half a box of tissues. When I finally grew quiet, the silence was deafening. Deafening in the way that makes you realize how terribly loud you were and how awful you sounded.  Jim was still just sitting there, next to me and saying and doing nothing. Nothing. Which makes all of this even more heartbreaking when I stop to think of how he is/was. Not a person to sit by without trying to comfort. Not a person who wouldn’t try to fix whatever was wrong. Not a person who would look utterly confused and uninterested.

Later, I got to a restroom and looked in the mirror. There I saw I had somehow broken a blood vessel between my nose and lip. There was a thin, red streak right in the middle of my philtrum, connecting my nose to my top lip. I have never seen anything like this and have no clue how I did this during my meltdown.

I suppose it could be related to all of the pressure from holiday expectations. Or it could be the fact Jim is slipping more and more which adds more pressure and more sadness and more reality to the situation. Or it could be me having a normal rough day. Whatever the cause, I have come to realize it happens. It happens, move on.  I feel better (usually) and it lets me know I do care. Sometimes it is hard to see I care because I am too busy being a Mom or worrying about money or trying to fix dinner or driving to some practice or event or working or something other than focusing on our crummy situation. These moments of heartbreak and genuine sorrow and anguish let me know I am still human. I am still full of compassion and love and I am hurting. I don’t always allow that to show, but when it does, it does. Big time.

Then you know what happened?  I worked. I had a friend call and say “hi”. I got two e-mails from friends. I watched Frances play in a band concert. I saw Brad smile and show his wonderful personality to me and others around us. I picked Jim up from respite care and they told me while everyone was listing things they are thankful for, Jim said he was thankful for me. For me. The woman he had just watched sob and turn into a ball of mush.

So, I am good. I am muddling through and working through as best I can. I don’t have a manual on how to emotionally handle this and I am doing what I can, when I can, the best I can. Everything else will have to just be.

December 2013

December 2013

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (18)

Help your Caregiving Friends.

Jim carrying the tree to our vehicle at the tree farm. Dec. 2006.

Jim carrying the tree to our vehicle at the tree farm. Dec. 2006.

It’s that time again. You either love it or hate it. Few and far between are the ones with no opinion. The Christmas season brings back so many wonderful memories, it is hard to not become sentimental at the first notes of a favorite carol or feel as if something is missing without eggnog in the fridge or white candles in the windows. While all of this is remarkably picturesque and the stuff movies are made of, there is a lot of pressure and stress that tags along for the merriment.

So, I have decided to try to help all of the friends and family for caregivers of dementia patients. I am sure this list could have quite a few more things added, but this is what I have right now. As soon as I hit “publish” I will think of ten more things.

First of all, if you are taking the time to read this, you care and you are commended for being a supportive and concerned friend. But, (there’s always a but, right?) as much as you want to help and as much as you want to be there for your friend, it is as impossible for you to entirely understand what they are going through as it was for you to do so before you had children (or grandchildren). There is just no way to convey the enormous emotional and mental overload that comes with both. So be patient and let them seem forgetful and let them be late without glancing at your watch and let them forget to thank you for the wonderful dish you dropped off. They are grateful, but they think at the wrong times to mention it. And to those reading this who have “disappeared”…..don’t worry. You will be welcomed back with open arms. Don’t be embarrassed by the amount of time that has gone by; for most caregivers, days run into weeks that run into months and they aren’t really 100% sure how long it has been since you two last chatted anyway.

So here are the beginnings of some tips for friends and neighbors of caregivers. Please feel free to add your own in the comments section.

What a wonderful surprise this holiday decoration was when my friend dropped by to hang it on our front porch. That is the Christmas spirit….

What a wonderful surprise this holiday decoration was when my friend dropped by to hang it on our front porch. Words don’t convey how special this simple item now is to me.

  • Just be there. As their loved one progresses, it is lonely anytime of year. But during festivities and social events and times of sentimentality, life can be bittersweet. Just having a friend to be present is a huge gift. It could be just hanging out together, or it could be watching a tv show or calling or sending an e-mail or dropping by to check in or…..ok, you get the picture. Let them know you are thinking of them. It helps. A lot.
  • Help with decorations. We just went and cut our tree at the same tree farm we have been going to for 6 or 7 years. Love this tradition. It is our tradition. I can’t change that. I don’t want to change that. But this year, I had to come inside, get the scissors, (I had asked Jim to, but he brought them to the backyard first and then brought them back inside because he didn’t see me out there) cut the twine holding the tree to the roof of our van, put on the gloves and lift that tree and carry it to the bucket I got out and filled with water and I set it up and…ok, you get this picture too. Right? You know what? I don’t mind doing all of this. But I did it with Jim standing by watching and I knew it hurt him because he knew he should be doing it and it hurt me because I felt the same way. It was not a moment of triumph but a moment of inner-sadness. While I was trying to hang some lights out front, to keep that tradition alive as well, a wonderful friend popped by with a surprise; a decoration for our front porch. Not only did she bring it by, she hung it up and asked if she could help me hang the lights and garland.
  • If there are children in the home, ask if you can take them shopping for the caregiver. Or, better yet, ask the caregiver if you can borrow their loved one for a short time and take the patient to shop for the caregiver. If they are in a home, could you grab a little something the next time you are at the store, wrap it and drop it by the nursing home with a note it is from “Jim”? Can you imagine the wonderful feeling that would bring and the change in a day and a change in an attitude that could bring?  I no longer really care about opening presents Christmas morning. Yes, it is nice to a have something to unwrap and be surprised about, but really and truly, I know it would mean so much to Jim to do this for me, without me being the one to take him and to help him pick out something. A friend took Jim last year to pick out something for Frances and for Brad. My parents took the kids to pick out something for me. It doesn’t have to be the same person doing everything. Just do what you can to help in a way you are comfortable with. You might have to get creative, there are so many scenarios a family could have, but if you are able, please try to bring some Christmas spirit to the situation.
  • Help them help themselves. I want so badly to bake cookies, decorate, send out cards, visit friends, wrap gifts, sing carols and watch night after night of old holiday classics….but I just can’t seem to be able to figure out what I am doing. I’m not saying bake the cookies for them, but maybe see if you can stop by and help them. Or help them with cards (I am ashamed to admit we haven’t sent any out in years and now we only receive a handful) or ask them if they can sit with you and watch A Christmas Story (trust me, they need a good laugh). Just setting aside the time and making the effort and commitment to do these things will pay off because they will be so glad they did. And having your help will make it even more special.
  • Please do not stop inviting them to your annual party. They know you are still having it. They know they used to go. They know the only reason you haven’ t mentioned anything is because you have no idea what to do. Invite them anyway. Let them tell you “no” or let them find someone to stay with their loved one so they can join the fun. That is how much it means to them….they will pay someone and work hard to find someone to “sit” for them so they can attend. Better yet, be the friend who doesn’t care about going to said party and offer to sit for them so they can go catch up with friends and neighbors. This type of socialization and fun can be the difference between depression and happiness. Can you find a way to include them in your fun? If you are going to view holiday lights, can they tag along?
  • On that note, offer anytime to just come sit with their charge so they can do some holiday cheer. Whether it be dropping off gifts to friends or going to a movie or dinner or out for some holiday shopping ALONE, that is a gift to them all upon itself.
  • Don’t forget, when the New Year comes, think of them and invite them over or out or come by to help ring in 2015. And while you are at it, tell them how much you have missed them in 2014 but that you understand. Make a resolution (and stick to it) to visit them or contact them more regularly because your friendship means so much to you. It means as much to them, but they are just too overwhelmed to share that with you. Honestly, that is the best gift you could give. It doesn’t matter if you are ashamed because you fell off the face of the earth when they became engrossed in caregiving. It is never too late to come around and admit your selfishness and inconsideration and to make amends. They probably feel guilty for not calling you more or trying to reach out to you too. Relationships work two ways, but at some point there is always a person who gives more and a person who takes more. I have learned I am in the stage of taking more and it is a hard, hard, hard thing to admit and to do day after day. If you were previously the one who was usually a giver, you know what I mean. If you are a friend who usually takes, it’s your turn. You have to believe me, they miss your friendship and will most likely welcome you back with open arms. They didn’t stop coming round because they wanted to and it had nothing to do with not wanting to be your friend.
    Jim lifting Frances up for topping off the tree in 2010.

    Jim lifting Frances up for topping off the tree in 2010.

    Just give them a hug and be grateful for another day, another holiday season and another year 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 (3)

Looking for the Easy Life

Jim wearing his Air Force blues with Frances and Brad for Career Day at school. Nov. 2010

Jim wearing his Air Force blues with Frances and Brad for Career Day at school. Nov. 2010

Sometimes in life, nothing seems to go right: lines are long, rain comes with no umbrella in sight, a drink spilled, having to stay on hold so long you miss another important commitment, you start to fix a recipe only to realize you don’t have a key ingredient…. Little things out of synch add up to entire days that feel as if the whole world is against you. It is difficult to look at each tiny annoyance as just that; an insignificant bump in the road of life. They all seem to run together to pull you towards a negative thought process and in return, a negative outlook and eventual sour attitude.

And then something happens. Stars align in a good way and your luck changes: a parking spot opens up in the front row at Costco, you win a drawing, someone you haven’t seen in a while gives you a call or better yet they stop by for a visit, the kids laugh instead of argue at the dinner table, work flows easily, you drop your phone and it doesn’t break…. Things fall into place seemingly with no effort. It is something you could get used to, but you know better. You know it is temporary and to enjoy it while you can. There is always a shadow lurking just out of sight and you are completely aware of its presence.

That is how I feel. I am teetering on an uneven, unstable cliff. At any moment, all of the good things that happen for our family can vanish and we can tumble, freefalling into nothingness, at any second. With me at the helm. Me in charge. Me being blamed if it happens. Me knowing that I am guilty of not stopping the inevitable from happening. Even though it isn’t my fault Jim has this disease, it will be my fault if I don’t keep our family from losing everything and it will be my fault if the kids have long term psychological problems and it will rest squarely on my shoulders if something unexpected happens to Jim.

With all of this weighing so heavily on me at ALL times, it seems a wonder I haven’t had some sort of nervous breakdown. Recently, I have felt like I might. I have felt the tension in my body. I have recognized warning signs and become aware of the pulses in my mind and muscles. I am cognizant enough to understand what is happening and that changes need to take place. I have the personality that lets me believe that I am capable of anything. If I don’t already know how to do something, I can figure it out. I can learn, I can adapt, I can do whatever is necessary. But I can’t. I can’t sustain this life. I can’t work full time hours that are dictated and not flexible, follow up on paperwork and appointments needed for Jim, pay the bills, clean the house, cook the meals, grocery shop, work in the yard, do the laundry, drive to lessons and practices, check homework and sign and duly note whatever slip of paper that is sent home this week from school and, somehow, through all of this manage to look like I am doing ok. I’m not. I’m not ok. I have a husband that will tell me he has taken a shower and washed his hair when I can clearly tell he hasn’t. I have a husband that lost his wallet two months ago (again) and I have to take him (again) to get a new i.d. I have a husband who can’t figure out how to put the covers on himself at night. I have a husband that has the best attitude in the world but can’t stop himself from making comments to the kids that can be hurtful and antagonizing.

So, I was trying to figure out what I should do about work and the kids and Jim and everything when life happened. Jim has slipped just a tiny bit more, but enough that I know I need to be here with him. If I am not, someone needs to. He can perform tasks, but needs guidance and oversight. It is time for a change.

Today, I can’t explain why, but I was upset and in a bad mood. The kids were getting the brunt of my force and Frances calmly told me,” Don’t take it out on us just because you are mad at Dad.”

And it hit me. It hit me like few things have. I wasn’t mad at him. I haven’t been mad at him. All the yelling and frustrations….it isn’t anger. It was recognition and it was sadness and it was being scared and most of all, it was helplessness at witnessing this great man succumb slowly to a death sentence I can’t argue away or buy a solution to or fight hard enough for. It was seeing him lost and confused and unable to perform a simple task that he would have been able to do a few months ago. I wasn’t mad, even though it certainly seemed that way. I was utterly broken and petrified at what I was witnessing.

As I looked at Frances and Brad, I saw the questions on their faces. Why was I upset with them when they really hadn’t done anything wrong? Why was I taking my frustrations out on them? I made the decision to be open and honest and share my realization. As I told them I wasn’t mad, but very, very sad and explained why, the tears came so unexpectedly. I forced myself not to sob, but I couldn’t keep them from my eyes. They seemed to get it. By being open and honest with them, they realized they were witnessing part of my mourning and my personal grief at the loss of their father.

Jim, Frances and Brad. Tagging our Christmas tree, Oct. 2014.

Jim, Frances and Brad. Tagging our Christmas tree, Oct. 2014.

I am not working this week.  I am pursuing options for Jim. I am not sure what will happen with my job. I know I can’t afford to quit and honestly, I don’t want to. I need a job that allows me to focus on something other than my own pity party. I need something that forces me to interact with others and shower and get dressed and put a smile on my face and fake some happiness for a time. I need that. But, I need to be able to answer the phone and attend appointments and have time to organize a family of 4.

I used to feel like I was turning into a single mom. And I kept repeating in my mind, “How do these single moms do it? Why can’t I? There must be something I am missing.”

Then a friend pointed out to me, “Karen, you are not just a single mom of two kids. You also have a third child who is home all day and who isn’t growing up to take on more responsibility, but is becoming more of a responsibility, a liability and a ‘what is going to happen next?’ How many things get broken and lost and half done that you must go behind and fix, find or financially figure out? Most single moms don’t have that extra burden.”

Friends save us. Family save us. Love hurts us and ultimately saves us. Grief rips us apart and time allows us to adjust accordingly. Alzheimer’s Disease forces you to grieve over and over again, relying on those friends and family to reappear as needed to enable us to do the adjusting that will keep us from shattering and unable to be saved.

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

Letting go and Surviving.

Screen Shot 2014-11-22 at 9.47.01 PM

This week I dropped Jim off at a respite care program for a 5 hour stay. It sounds like such a perfect solution to so many problems. But as I took him, I had flashbacks of taking the kids to preschool. Except instead of walking to the end of our block, we drove for 40 minutes. And this time, I wasn’t full of smiles (well, I was but I wasn’t feeling like it on the inside). I was sad. There was something unnatural about the whole scenario. I was hoping he wouldn’t mind being there with people much older than him (he didn’t) and I was thinking that I can’t believe I am taking my husband to a freakin’ daycare. DAYCARE!

When you take your young children to preschool, you accept and know they will be moving onward and upward to more school and learning and growing. It is the beginning of endless possibilities and a joyous, happy occasion. When I took Jim to his “school”, he was happy, but I know it is the start of something less uplifting and hopeful. It is the beginning of something we have known is coming, but now that it is here, it still seems surreal and unimaginable. He seemed content. He enjoyed the man who came to play guitar. He enjoyed the service dog. He enjoyed counting out kernels of corn for the church service on Sunday. He was at ease. And I was….what is the word…heartbroken.

One of the realizations I have faced in recent years is letting go. Not just of Jim, but of Frances and Brad. When they were younger, I was in “control”. I knew who their friends were, I arranged their playdates, I was in their classrooms as the room mom and attended all of their school events, all of their practices and games and was completely immersed in their world. There were very few facets of their life I wasn’t aware of. As they grew older, I gave them space, but for the most part, I was still very involved and “there”. Over the past year or so, I have had to let go. LET GO. I know this is a natural process for aging children, but somehow I seem to be doing it by myself, in huge doses, as Jim gets  less involved with much of anything with them and I get more involved with his day to day activities. So not only am I letting them go, I am doing so without getting my relationship back with my husband.

Since Jim can’t drive anymore, I have to rely on other parents and friends to help out. I can’t be at every practice and sometimes I can’t be at every game. That hurts. Sometimes it has nothing to do with Jim’s disease, just timing. But, if he could still drive, at least one of us would be able to be there. Now, it is down to just one of us and then I have to cover him as well and make sure both kids have rides, all of their gear, water bottles, any money or whatever is needed that particular day and have dinner ready, homework checked and at some point make sure Jim has taken a shower and has on clean clothes. At first, my conscious revolted. I didn’t want to not be a part of their games or practices or events of any kind. That wasn’t how it was for our family. But sometimes, life dictates more than you do. Frances has had several out of town softball tournaments and I needed to stay home with Jim and Brad. Guess what? She had a great time. She learned how other families traveled and packed and how to make sure she covered a few things on her own. Instead of worrying the whole time and stressing, I had to let go. I chose to concentrate on the fact she was being introduced and exposed to new ways of doing things and seeing how other families interact and live. Families that have two healthy parents and don’t have something quite so ominous hanging in the air. I am choosing to look at this as a way for my children to grow and learn and become even more independent. But boy, does it bite just a bit to let them go so soon.

Brad has had to get used to sometimes having us there and sometimes not. I try to make sure I show him undivided attention and ask lots of questions after the fact. Both kids seem to take it all in stride, but I often wonder if there are long term reprocussions. I suppose only time will tell. But the part that I despise the most is not being able to talk to Jim about all of this. I have finally started to learn that there won’t be a reaction and I will just be disappointed and it isn’t worth it. So I keep quiet and process everything in my mind.

So there it is…a possible silent, hidden positive from this undesirable situation; my kids learn some independence and they learn a lot more than our little family could ever teach them. I realize that I may be missing them, but they are growing and taking in concepts that will only add to their ability to cope in this great big world. They are seeing things that I would never teach them. They are appreciating our times together. They are leaving me behind a little sooner than I think I would normally be ready for, but I am grateful that other families have stepped up and taken them in and shown them a world I can’t. It is a bitter pill to swallow, but one I would eventually find being forced down my throat whether I liked it or not. Maybe having them learn so much now will make it easier when they are completely out of the house. I try not to get ahead of myself, but when the day to day humdrums get to me, I think of my future, our future….obviously I have no idea what lies ahead, but I do wonder how our holidays will be, how our daily interactions will wind up. I am having to let go of Jim, but I am also having to let go of my children. What am I capable of holding onto? What is left for me?

Yep….The Garner Foundation. I know with all of my heart that is my saving grace. I am going to help others. I am going to make a difference. I am going to show my children how to give back. So many help us in so, so, so many ways. I could never repay all of them. We could never repay all of them. But, this foundation will. I know it and believe it. I just wish I could keep Jim engaged and involved for a while longer. He would be so good and so helpful.

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)

That’s What Friends Are For

Jim, Jorge and George. Sept. 2014.

Jim, Jorge and George. Sept. 2014.

This is a guest blog piece by Jorge Cordero, a friend of Jim’s from his first years in the Air Force. They have a bond that nothing can break….not even Alzheimer’s Disease. 

A few years back I was given the news that my good friend Jim Garner had been diagnosed with early onset of Alzheimer’s. It was agonizing to receive the news but I was not surprised as I knew Jim’s Mom suffered from the same disease while we were stationed in Germany in the late 80’s. I had lost Jim’s contact information and the only e-mail address I had was from work and I knew he was no longer employed. I found Karen’s Blog as one of our Air Force buddies posted it on Facebook. After going through Karen’s blog and crying as I was reading I knew I had to get in touch with George Pacheco, our buddy from our days in Bremerhaven Germany. I called George and alerted him to Karen’s Blog. Another call came an hour later and now the two of us are crying on the phone. How could this happen? It is Jim Garner, the athlete, the star, the rock, our friend.

George and I knew of Jim’s diagnosis a while back but we really did not understand it. We didn’t know it would progress to his current state. One thing was for sure, he and I were going to see Jim and we were going sooner rather than later. No more postponing…well maybe by a month and a half. You see, I’m a defense contractor in Colorado and George is Government Civilian in Georgia working for the Air Force…it’s not easy to get our schedules synched. I had a trip to the Middle East and George had a high-level inspection coming his way. But we managed and on my return flight from Qatar I stopped in Virginia to see my good friends Jim, Karen and their beautiful kids Frances and Brad. George flew in on the same day and off we were to spend time with our buddy. This is my account of this emotional visit.

First, Jim could not have a better care giver, advocate, wife, partner, and friend than Karen. She’s as strong of a woman as it gets. I’m so proud of her.

I flew in to Virginia on the morning of 31 August, my friend George was flying in in the afternoon. The plan was for me to pick him that afternoon and then go to Jim’s house. During the day I was communicating with Karen of the plan when she suggested that I pick Jim first go to the airport and surprise George. What a great idea! I will do that and surprise George…except I was counting on George’s support when we saw Jim for the first time. Who was going to be there? Karen was out with the kids and she called Jim and gave him instructions. I was scared to see Jim for the first time in 6 years. I’ve had a little practice because my wife’s Dad suffered from Dementia, but still I was scared to see Jim. What if he didn’t recognize me…what if?

I drove to Jim’s and knocked on the door. Jim opened the door with a big ol’ smile…’Hey, how are you Jorge’? I was relieved, gave him a big hug and off we went to the airport. On the way to the airport, Jim was talkative and telling me about the different places as we were driving by. You could tell he had difficulty at times remembering certain details. I didn’t care, I was with my buddy and we were on our way to get the other. At the airport we met George, it was the first time the three of us were together since Jim visited us in Colorado as a birthday gift from Karen since their wedding. That night we went out to dinner and while at the restaurant we reminisced about our days in Bremerhaven,Germany.  We chatted with the kids and joked about the fun times in Europe. There also was truly the first time when I noticed Jim’s deterioration. He was struggling with the menu. He couldn’t tell what one of the items was. He turned to Brad and asked him, ‘what is this’? Brad said, ‘it’s grilled chicken.’ I started to get a clear picture of Jim’s condition. We went on with dinner, remarkably Jim could remember details and names of people we were stationed with in the late 80’s. George and I couldn’t remember, but Jim did. George and I looked at each other in disbelief. How can he remember those details but not what he did earlier that day? Later on Karen, George and I discussed this. Karen told us Jim’s short term memory is what has a taken a hit. This was proved once again the next day when were scheduled to go golfing.

That morning Karen asked Jim if he remembered what he was going to do. Jim could not remember. Karen reminded him that he was golfing. She asked him if he remembered who he was golfing with. He answered, ‘with Jorge.’ Karen asked, ‘who else?’ Jim answered, ‘the other guy.’ He couldn’t remember George’s name. This was a theme throughout our visit.

George, Jorge and Jim playing golf, September 2014

George, Jorge and Jim playing golf, September 2014

Golfing was great, it was like muscle memory would take over and Jim would hit those great, smooth drives down the center of the fairway…unfortunately he would lose track of which one was his ball. This disease sucks! One thing I noticed was that every time the beverage cart would come around, Jim would turn down anything to drink. It was a hot, humid day and he refused a drink. By the third time I kept thinking that he had to be thirsty so I went ahead and bought him a bottle of water, he downed the whole thing in one gulp. I was mad at myself because I should have known better.  As we were unloading the clubs from the car I noticed he had purposely put his water bottle in the trunk of the car. I asked him if he wanted it and he said no. The bottle was full and cold and it was a hot and humid day…I should have taken the bottle myself and put in the golf cart, but didn’t make too much of it. Later after I noticed how thirsty he was, I felt guilty not grabbing his water bottle.

After we got our golf cart and were getting ready to head out to the first tee he took out a brand new glove and a sleeve of balls from his bag and laid them next to him. By the time we made it to the first tee and the folks behind us took our picture, I noticed Jim had a very old glove on, which is ok but this one had a hole so big his thumb was sticking out of it. I asked him if he wanted to use the new glove he took out and he said no. If you look closely to the picture of the three of us standing with our clubs, you can almost see it. I knew what was happening but didn’t make a big deal out of it. Throughout the round I kept seeing him taking yet another new glove out. By the end of the round he had three brand new gloves out…he never wore any of the new ones. Again I knew better and didn’t say anything.

In another instance I let him drive the cart, on two different occasions he could not differentiate from the gas and the brake pedals. He tried to get the golf cart going by pressing the brake pedal and I could see he couldn’t figure out why the cart was not moving. I very calmly told him ‘it’s the other one Jim.’ I thought to myself there was a good reason he had given up driving and it also reminded me that Maria’s Dad was in two different car accidents before he was diagnosed with Dementia. Then I wondered if Maria’s Dad was already exhibiting traits of the disease and no one knew. I was glad to know Jim had given up driving and knowing that he was safer and the people around him as well. He would never forgive himself if he hurt someone.

After golfing we went to Fudruckers for lunch and I knew already he could have a hard time reading the menu (I had noticed it the night before at dinner), and he did. You could tell he couldn’t decide what to have because he couldn’t process reading and assigning meaning. I helped him decide by offering choices and he settled on a grilled Chicken Salad. During lunch we were talking and you know how proud he is of the kids. We were talking about the kids’ activities and what they were involved with. At one point he said…’and my daughter, what’s my daughter’s name?’ I just casually said ‘Frances’ and didn’t make a big deal out of it. To me it was important to help him through all of those lapses without him knowing that I was doing it.

During the 2 days we were there he suggested four or five times going by Gary Cramer’s office to say hello. Only problem was we were there Sunday, and Monday was Labor Day. Gary was not going to be at work. I again mentioned to Jim each time that Gary probably would not be at work as it was Sunday…or Monday when he brought it again. He didn’t remember that we had the same conversation several times. I just went with the flow.

We had such a great time with Jim, just like we always did. It was special and it was necessary. He needed it, Karen needed it, George and I needed it. Karen knew her husband would be taken care of and looked after during this short time. I think we gave her a little relief, even if it was for a few hours. I’m glad we had the opportunity to share a few days with Jim. Hope we get to do it again soon.

Every trip comes to an end, this one was very emotional and one that we were not prepared for. As we walked out to the porch to say our goodbyes, George gave Jim a hug and told him that he loved him. Jim started to cry. I think he knew that the next time we saw each other he would have a harder time remembering who we are. George started to cry as he was hugging our buddy. I was trying to do my best to fight the tears but seeing Jim and George crying was too much for me…too much for Karen. All four of us were crying because this disease is taking our friend, but most importantly is taking Karen’s husband, Frances and Brad’s Dad. As I write this I still fight the tears but I also have a great memory of my friend. As George and I returned back to our homes,

George put together a memento of our round of golf with Jim. Each one of us has a framed scorecard of our round of golf with pictures of us at the course. Mine is in my office right in front of me where I get to look at Jim’s big smile all day long. I loved the time with my friend. We love you Jim! I’m thankful Jim has such a strong woman in Karen as his partner, care giver, advocate, Mom of his children and his soul mate. Karen you are God-sent. Love you guys.

Jim enjoying the scorecard and photos from his visit with Jorge and George. Sept. 2014

Jim enjoying the scorecard and photos from his visit with Jorge and George. Sept. 2014

One more comment, I remember when you, George and I were discussing the finances and Jim’s retirement paycheck and how it was divided (disability vs retirement). He patiently listened to us talking about it but when we thought something didn’t add up, he got worried. I could tell in his demeanor. I remember reading in your blog that he knows what’s going on and how frustrating it can be for him when he can’t remember something…he knows. He gets frustrated…he knew something was not right but didn’t have a way to help…I could see fear in his face. At one point, and I don’t know if you heard him, he said…’please help her.’ It was like he was telling us…’I can’t help and I know I can’t help, but you and George can.’ I know it is devastating to him. It is important for George and I to help you in any way we can. If you ever have a question regarding the military and the retirement, we’re here for you. Jim asked us to help you…and we will!

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)

Give Me Back My Jim Please

Jim and Frances hanging Christmas tree lights, Dec. 2007.

Jim and Frances hanging Christmas tree lights, Dec. 2007.

Would someone please give me back my husband? Even if for a day? Can I please have the man who swept me off my feet with flowers and cards and love letters? Can I feel his arms around me, strong and steady and making me feel so protected and secure? Can we please, please have another day of carefree happiness and conversation? Yes! Conversations where he has an opinion and we have easy banter back and forth for hours.Hours that seem like minutes. A voice strong and clear and gentle and warm.

Frances and Jim having fun at Brad's 5th birthday party. March 2009.

Frances and Jim having fun at Brad’s 5th birthday party. March 2009.

Can I please hear the wisdom in his words and the clearness of his voice? Will you please give me a day to lay under the stars in Vegas again dreaming together of a life yet to unfold?

Who can capture the many talents our children’s father had so they can learn from him and remember he was a jack of all trades? Will you please let them see he was one of those special Dads? The kind that has patience and energy and love and wisdom and talents to share and do so willingly.  The Dad who helps coach their teams and is PTA Vice-President. The Dad who takes off work to attend doctor visits. Give him a day to teach Brad woodworking and firemaking and how to work on a car. Let Frances see that a man can be strong and yet help around the house and iron his own clothes and mend his own socks. Show both kids the man who volunteered at their schools and was a big kid himself. Let them witness his natural athletic ability and give them more chances to play ball with the man who would love nothing more than to do so. Let them laugh at his sense of humor and memorize his laughter.

Jim walking with Brad for his preschool Halloween parade. Oct. 2007

Jim walking with Brad for his preschool Halloween parade. Oct. 2007

I am begging you to let them have their time to learn and remember….remember him as the father he was, not how he is. Remember the nights he was up, holding them and singing to them. Remember the books he read, the baths he gave, the messes he cleaned. Remember his laughter and the twinkle in his eye and the wit in his words. Show them the Dad who would spend hours playing ball or working on a puzzle or whatever tickled their fancy.

Why are you taking their Dad from them? Why are you being so cruel to these innocent kids? Why are you leaving me alone and searching for a way to survive?

Please give me another day of hearing Jim up first thing in the morning, starting his morning routine and getting more done before I thought of getting out of bed than I would accomplish all day. Let me see him in action, installing the sprinkler system in the backyard and building a shed and rewiring an outlet.

Can he please drive us again to a movie that he will be able to follow and enjoy? And can he take my hand and hold it, making me feel special and loved and wanted?

Will you please let me see Jim, with his back ramrod straight, so rigid and proud? So sure of himself and capable of anything…..a leader and a good, good soul.

Jim and Frances having some fun in the snow, March 2009.

Jim and Frances having some fun in the snow, March 2009.

Will you take away the burdens I face each day so I am able to just focus on him and see him for all he was and still is?

Please take him to the 3 states he has left to make it to all 50. Give him back himself long enough to be able to travel and enjoy the views.

Please give him a day to enjoy the awesome children that belong to him; that he raised and showered with affection for so many days. Let him hear them say “I love you” and to say it back. Let him watch their ball games and their school shows  and understand how amazing they are. Let him enjoy their music and their jokes and their laughter. Let him not get irritated and quiet. Let him speak so they can hear his stories so they will be able to recall them to their own children one day.

What can I do to let you give me back my best friend and my biggest fan? How come you have taken him from us? Please give him back, if only for a short time.

Jim helping Brad build a shed. July 2010.

Jim helping Brad build a shed. July 2010.

Stop. Stop taking him. Stop robbing him of his family and his life and his abilities. Stop being so cruel.

Stop making him a victim. He is not a victim. He is an amazing person, with an amazing ability to do crossword puzzles and to remember jokes and  to build things. Please give Jim back his natural smile and quick wit. Please stop robbing him of his natural easiness. He has lots of it and you shouldn’t be taking it away from him. And you shouldn’t be taking him away from his children.

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